Cross Party Group on ME

It's not surprising that many patients in the UK want to be separated from any suggestion that they suffer from either a psychological illness, or a 'fatiguing' illness without other symptoms. It seems to me that the vote at the CPG on ME was probably an attempt to do just that. It seems quite reasonable to me. Asking for 'ME' to be recognised as a discrete biomedical illness is part of the same process.

It seems to me that there might be more evidence to suggest that patients with post-exertional malaise might have a distinct illness, than there is to suggest that all fatiguing illnesses are identical. So, if we are following the evidence, then those who call for 'ME' (if it is defined by 'post-exertional malaise') to be considered separately from other fatiguing illnesses might have the balance of the evidence on their side. It seems like a reasonable position to me, depending on the fine details.

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The problem with separating things out is that the doctors do not do that at diagnosis hence these days most people with ME will be given a CFS diagnosis whatever the range of symptoms. From a research perspective it is important to push for work on sub groups but from a support persective it is important to ensure that people get appropriate support whatever name doctors use in their diagnosis. Hence it seems important to keep groups such as the CPG covering all diagnostic labels that Drs will use and I would hope that their interest would extend to other labels that psyciatrists may introduce (such as pervasive refusal syndrome and whatever is in DSM V) in order to keep control over people with ME.

I've always likened these 'name' debates to a bunch of teenagers with guitars in a garage, arguing about what the band will be called - and never ever playing any music. It's so much easier to classify who we want to be and describe how we wish to be seen, than it is to acknowledge how little resource you actually have and face the fact that it's the audience that defines how you are seen. Ironically a prolonged self regarding wrangle about M.E not M.E/CFS (or whatever combination is deemed offensive) will likely have far more descriptive power for how M.E > ME/CFS > CFS/M.E > CFS affected people are perceived by the wider society, than any planned advocacy could ever have.

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The terms 'ME' and 'CFS' are not just a matter of nomenclature.
They apply to different diagnostic criteria.
The term 'CFS' is used by the less selective criteria, including the Oxford Criteria, for which post-exertional malaise is not a requirement. The Oxford CFS Criteria selects patients with 'fatigue' only, which could include psychiatric patients.
The term 'ME' is used by the more selective criteria, including the ICC, which is one of the most selective criteria. The term 'ME' is also used by Byron Hyde, and more historic criteria, such as Ramsay.
So the names mean something, and refer to specific descriptions of disease.

The use of the terms helps to define the illness, and how research funding is directed.
The way the illness is defined is a very important issue.
Actually, it couldn't be a more important issue, in terms of research, treatment, and the qualify of life for patients.

You mention a lack of resources.
This is all the more reason why those meagre resources are put to best use, on well focused research, with well defined cohorts.
I've always been very clear that my personal preference is that all CFS and ME patients should be looked after well, and included.
But the illness, or syndrome, which includes post-exertional malaise and other symptoms described in the CCC and ICC, needs to be researched and treated as a well-defined biomedical cohort.
That doesn't exclude other subsets from being investigated, but researchers need to look at well defined populations, and not a broad selection of unknown pathologies.

I think the more that 'ME' is separated from 'Chronic Fatigue', the quicker we will make progress in research and treatment for that group of patients.
The way that pathologies are defined is crucial in understanding disease.

The problem with separating things out is that the doctors do not do that at diagnosis hence these days most people with ME will be given a CFS diagnosis whatever the range of symptoms. From a research perspective it is important to push for work on sub groups but from a support persective it is important to ensure that people get appropriate support whatever name doctors use in their diagnosis. Hence it seems important to keep groups such as the CPG covering all diagnostic labels that Drs will use and I would hope that their interest would extend to other labels that psyciatrists may introduce (such as pervasive refusal syndrome and whatever is in DSM V) in order to keep control over people with ME.

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Yes, I agree that the clinical situation is different from the research situation, and that all patients need to be protected.

But just because doctors are useless, or don't have enough knowledge to distinguish between 'chronic fatigue' and 'Chronic Fatigue Syndrome', doesn't mean that we should be relaxed about that situation.

My main issue is with recognition of sub-sets, and of different patient needs. And this applies to both research and clinical settings.

For example, if someone has 'chronic fatigue' related to depression, or other psychiatric conditions, then applying Graded Exercise may (or may not) be beneficial. I say it 'may not' be beneficial because research hasn't been carried out on this specific sub-set of fatigued patients, so we don't know. So, separating the sub-sets would benefit all types of patients, and all sub-sets, not just the 'ME' sub-set.

Applying GET to someone who experiences 'post-exertional relapse', and who has therefore reduced their exercise limits in order to protect themselves against relapsing, is clearly inappropriate, as repeatedly demonstrated by the patient organisation surveys and by the PACE Trial and FINE Trial.

The terms 'ME' and 'CFS' are not just a matter of nomenclature.
They apply to different diagnostic criteria.
The term 'CFS' is used by the less selective criteria, including the Oxford Criteria, for which post-exertional malaise is not a requirement. The Oxford CFS Criteria selects patients with 'fatigue' only, which could include psychiatric patients.
The term 'ME' is used by the more selective criteria, including the ICC, which is one of the most selective criteria. The term 'ME' is also used by Byron Hyde, and more historic criteria, such as Ramsay.
So the names mean something, and refer to specific descriptions of disease.

The use of the terms helps to define the illness, and how research funding is directed.
The way the illness is defined is a very important issue.
Actually, it couldn't be a more important issue, in terms of research, treatment, and the qualify of life for patients.

You mention a lack of resources.
This is all the more reason why those meagre resources are put to best use, on well focused research, with well defined cohorts.
I've always been very clear that my personal preference is that all CFS and ME patients should be looked after well, and included.
But the illness, or syndrome, which includes post-exertional malaise and other symptoms described in the CCC and ICC, needs to be researched and treated as a well-defined biomedical cohort.
That doesn't exclude other subsets from being investigated, but researchers needs to look at well defined populations, and not a broad selection of unknown pathologies.

I think the more that 'ME' is separated from 'Chronic Fatigue', the quicker we will make progress in research and treatment for that group of patients.
The way that pathologies are defined is crucial in understanding disease.

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There are clearly huge issues around diagnosing ME or CFS or CF. We need to separate out three separate issues:

1) How do you choose a research cohort -Given we don't understand the mechanism for ME or CFS then we don't really know if PEM is a key symptom in differenciating them. However, I think a well defined trial should either have a tightly controlled cohort or should involve a very large number of patients and look across groups of symptoms. I would have thought a well defined severe cohort would be perhaps have more obvious problems which could then be looked for in less severe patients

2) How should a doctor diagnose someone presenting with long term fatigue. Given the number of papers suggesting that half of those diagnosed with CFS/ME have other diagnosable diseases there is clearly an issue here.Doctors need good diagnostic protocols that separate out those with different conditions and suggests what tests to use.

3) The label that a doctor gives a patient. Many doctors have such ignorance in this area that they will use a variety of labels and things such as DSM V will confuse things further. A good diagnostic protocol would help but we need to make sure that people with ME or CFS can get appropriate support and don't get sectioned by ignorant doctors.

1) How do you choose a research cohort -Given we don't understand the mechanism for ME or CFS then we don't really know if PEM is a key symptom in differenciating them.

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PEM seems like a good starting point.
Also the CCC or ICC could be used in research to further refine cohorts. The CCC is being used in quite a lot of US research now.
I don't think it matters which specific criteria are used in research, as much as it is crucial to use a well-defined and highly selective cohort.
Each research study using a well-defined cohort will give us more information.

Lipkin has taken a slightly different approach to selecting a well defined cohort, based on Mikovits' preferred cohorts. They recruited patients with a viral-like onset. So this is another way of defining an exclusive cohort.

May I ask if you are doing your lobbying as part of a charity, group or as an individual CFS patient?

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I am a Scot, living in Scotland, I have voting rights and as a patient diagnosed in Scotland as having the illness currently known to both the WHO and NHS as ME/CFS I exercise my democratic right to lobby my MSP's with regard to both my diagnosis and treatment. What is your position?

Sorry to ask the q's just want to get your experience and position clear.

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No I was not at the meeting, the energy I have is first expelled continuing my employment such that I have no reason, as a tax payer, to justify my right to lobby my Parliament to anyone else.
My experience is a lifetime living in Scotland, politically active since I was 19 and six years dealing with the illness defined by the NHS and the WHO as ME/CFS. No, I did not attend the meeting, I wasn't invited, neither did I vote to be represented by either the TYMES trust or the 25% group to which you refer, I will however be pursing their democratic right to do so, as a tax payer.
If it interests you, on current evidence I object to being so represented, that is as suggested by the opening post in this thread. Do you know that that post was fallacious, if so I would be interested to hear your objections?

The TYMES trust and the 25% Group who attend these meetings and voted aren't of the impression that the meetings are in any danger of closing down. [/quote]
Good for them, it seems, unless as I've already asked, that the original post is fallacious that MY MSP's disagree.

The people who seem to be saying this would be the 1 MEA person who attended and wrote the report and yourself. Both against the result of the vote.

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The result of the vote, and I note that you offer no evidence to the contrary of that offered by the 1 MEA person to have taken the time to inform the rest of us, was that the MSP's involved felt they were no longer able to support the group in their discriminatory pursuit, thus dissolving what I have already indicated is a political initiative with no legal reason to give political access to either group.

I'm finding it hard to locate evidence that the group was ever set up to cover anything other than "ME". There seems to be no mention that the group was ever set up to cover CFS or "any other fatiguing conditions".

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My turn, you talk as if their is abiding consensus for differentiating definitions of either illness, beyond the wishes of those who think they they would prefer one in preference to the other, using whichever unaccepted differentiation they have individually or (minority) collectively adopted.
My understanding is that while the Scottish Parliament is prepared to consider different criteria this is an 'early stage initiative' rather than a firm political stance, despite our like for sticking one finger up to the rest of the UK and wider world.
But if using accepted and agreed terms within Scotland or the UK you can differentiate ME and ME/CFS indicating the methods used by existing NHS staff to effectively demonstrate accuracy across diagnosis, and in so doing indicate the objective tests used to thus evidence that difference, then I will concede the point.

Holmsey, it seems that your own views might be a minority view in Scotland, because a majority voted for the CPG on ME to focus on 'ME' only. I just wanted to point that out, because you keep asserting that people who have different views to yourself are in a minority, when the evidence suggests otherwise.

As someone who fell ill at the peak of Chalder/Wessely stuff, I don't think I can really appreciate the attachment some have to the term 'ME'.

I get the impression that for a lot of people who have been ill for a long time, they were told they had 'ME' and were treated with a degree of respect and fairness, and then people started telling them that they really had 'CFS' and treating them with disdain. Given those sorts of experiences, I can see why some would be desperate to avoid the 'CFS' label, and protect the 'ME' label, but I think that this desire can end up being counter-productive.

The term 'Chronic Fatigue Syndrome' is one which leads to people treating us dismissively - but we have so many more important problems to deal with imo, and often have really strong supporting evidence behind us too. Pointing out the social problems caused by the 'CFS' label is certainly worthwhile, but I think some people get too caught up in these semantic issues because of their simple symbolic value... and also, the term M.E. is problematic too, so arguments about CFS vs ME are never going to be a strong suit for patient's.

Having said that, I'm also pretty ignorant as to a lot of the politics around these matters, and this cross party group. I've got no idea what chance their is of them being any use anyway. Do the various ME groups spend much time discussing and debating things with one another? It seems like some of these problems could be lessened by a bit more co-ordination and communication, even if co-operation is out of the question.

Holmsey, it seems that your own views might be a minority view in Scotland, because a majority voted for the CPG on ME to focus on 'ME' only. I just wanted to point that out, because you keep asserting that people who have different views to yourself are in a minority, when the evidence suggests otherwise.

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ME DOES NOT EXIST IN SCOTLAND AS A SEPARATE CLINICAL ENTITY, FACT.

Freedom of choice from a limited choice isn't freedom at all and by the same token a majority of a minority isn't a majority. Who elected these groups to represent all ME or ME/CFS sufferers in Scotland, who authorized them to throw away a route to political change, I certainly didn't and I'm paying for that particular parliament.

Yep, 25% group that sounds like a majority!
I keep seeing the figure, 250,000 sufferers in the UK alone, how many of them are represented here?
My own views, that MSP's should represent their full constituents, I doubt that's unsupported in Scotland, have you even visited let alone tried to understand us, we're more about equality than anywhere else I'm aware of, not being better than anyone else is almost genetic.

Same challenge stands Bob, show me the evidence that anyone in Scotland or the UK, consigned to the ME/CFS bucket by the NHS, don't actually have what these groups would term ME.

For now it's a self proclaimed title, a self proclaimed illness with no accepted objective testing. If we're to continue challenging the pseudo-science of the Psyc's then don't you think we should stick to science ourselves, or at least consensus before making bold political statements which only those who actually take the time to support us will hear?

Am I wrong to be angry, I don't think so.

Re-read my mails if you have issues with my views on this subject, answer my legitimate questions, my legitimate right to representation under the political system my taxes pay for and then I'll entertain your criticism, until then can you let UKXMRV answer the questions I posed.

To save you another mail, by trivial I mean that THERE IS NO CURRENT WAY TO TELL WHO HAS 'ME', WHO HAS CFS AND WHO HAS PVS in Scotland. There is no way because we don't have consensus on what each is, and even if we did, it hasn't been applied to all those already diagnosed. We want the world to recognize our plight, our internal dialogue, and yet you appear to support the breaking of supportive ties, if you're Scottish fair play, you're entitled to your view, if not then sorry, go get your own Government to consider a difference and annoy those who play ball as much as you want.

And to save anyone else the trouble, I absolutely support trying to use what we would call the 'ME' criteria for research purposes, I have no more interest than anyone else in wasting valuable research grants on those unfortunates who have fatigue due to psychological or other reasons. I absolutely believe that there is a distinction, my argument is that this has never been applied and therefore it is HIGHLY likely that some who claim to be 'ME' will end up CFS or FS and MANY branded ME/CFS under WHO or the NHS will be ME. That makes my MSP's right, and there's two words you don't often see in any of my sentences.

We want the world to recognize our plight, our internal dialogue, and yet you appear to support the breaking of supportive ties, if you're Scottish fair play, you're entitled to your view, if not then sorry, go get your own Government to consider a difference and annoy those who play ball as much as you want.

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For the record, I'm in favour of inclusivity, in terms of support for patients.
And I don't have an opinion about how the 'CPG for ME' should be run, because I know nothing about it.

I've just been trying to point out that this is a complex issue, and many people have strong opinions about it for many legitimate reasons.

There have been some strong, insulting and offensive opinions expressed on this thread, and I think they have been deeply unfair.

I think it's just a case of people not taken the time to find out why others have different opinions.

If we all tried to understand each other better, then I don't think we would end up in such situations as has happened at the CPG on ME.

I've tried to explain some of the issues, but I obviously haven't done a good job of communication.

No I was not at the meeting, the energy I have is first expelled continuing my employment such that I have no reason, as a tax payer, to justify my right to lobby my Parliament to anyone else.

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This sounds like something of a condemnation of those of us that don't work. Just to be clear, we don't work because we can't work. And we retain the right to lobby our respective governments, with or without paying taxes.

I'm happy with your reply Holmsey, you have every right to act as an individual. Your campaigning is for your group and I hope appreciated by them.

It does appear that the XPG was set up on "ME" and it therefore stands that if people with CFS want a Scots Cross Party Group then the best idea would be for them to set one up to act in their interests.

What happened with some of the old ME groups which we set up pre-CFS by PWME is that people with CFS have joined them and in the case of AFME they even tried to change their name to allow for fatiguing illnesses. This has caused problems for those of us with ME pre-CFS.

If different groups wants XPG groups then they need to set them up. It would be unfair to try and change the ME groups if the PWME don't want them changed.

I'd, personally far rather have a group set up for ME and just wish that the English APPG would take the same vote.

If we lose one or two MP's I'd not be bothered if the dynamics of the group changed so that they were talking about ME soley. This wouild be a huge step forward.

People with CFS and people with ME can work together when their interests are joined. However there may be times (like with AFME campaigning to introduce the English clinics into Scotland) when the two groups may not agree. Just an example. If the Scots were to open the first centre of excellence to treat ME (and not fatiguing illnesses) then that could act as a model for the whole of the UK and I hope break the NICE stranglehold.

If PWME could be treated with medical treatments at a COE and it was shown to be beneficial then PWCFS could lobby for the same thing.

It's not (as suggested earlier) asking MP's to pit one disadvantaged group over another. It's to give the two groups equality. CFS people and CF people can start up their own XPG and their own COE if they choose to.

This sounds like something of a condemnation of those of us that don't work. Just to be clear, we don't work because we can't work. And we retain the right to lobby our respective governments, with or without paying taxes.

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Hi Valentijn, Yes, I re-read this today and you're right it could be construed that way, for the record I feel lucky I can still work, although 'still work' is a loose term. With respect to those who can't, you have my full support, my sympathy and my admiration, whenever I talk with non-sufferers, including my MSP, the first thing I point out is how lucky I am compared to many with the same illness.

The point I was trying to make is that writing or mailing my MSP's, each and every time there is a new paper published, then challenging them to act upon the boasts they make regarding Scotland are about as much as I can cope with.

In the past I've been very active politically, marches, protests, working as a shop steward and branch secretary, sitting upon community council, committee's for local improvement, all that is currently beyond me and I lament that. But I have seen and done enough to know that walking away rather than engaging in dialogue is a futile waste of effort and opportunity, it serves no one, that type of 'representation' is one that frustrates me to the degree that I've been less than charitable at times in this thread.

For that I apologize unreservedly, I've also made my position clear and so have no need to comment further so I'll politely bow out from further comment.

I am a Scot, living in Scotland, I have voting rights and as a patient diagnosed in Scotland as having the illness currently known to both the WHO and NHS as ME/CFS I exercise my democratic right to lobby my MSP's with regard to both my diagnosis and treatment. What is your position?

No I was not at the meeting, the energy I have is first expelled continuing my employment such that I have no reason, as a tax payer, to justify my right to lobby my Parliament to anyone else.
My experience is a lifetime living in Scotland, politically active since I was 19 and six years dealing with the illness defined by the NHS and the WHO as ME/CFS. No, I did not attend the meeting, I wasn't invited, neither did I vote to be represented by either the TYMES trust or the 25% group to which you refer, I will however be pursing their democratic right to do so, as a tax payer.
If it interests you, on current evidence I object to being so represented, that is as suggested by the opening post in this thread. Do you know that that post was fallacious, if so I would be interested to hear your objections?

The TYMES trust and the 25% Group who attend these meetings and voted aren't of the impression that the meetings are in any danger of closing down.

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Good for them, it seems, unless as I've already asked, that the original post is fallacious that MY MSP's disagree.

The result of the vote, and I note that you offer no evidence to the contrary of that offered by the 1 MEA person to have taken the time to inform the rest of us, was that the MSP's involved felt they were no longer able to support the group in their discriminatory pursuit, thus dissolving what I have already indicated is a political initiative with no legal reason to give political access to either group.

My turn, you talk as if their is abiding consensus for differentiating definitions of either illness, beyond the wishes of those who think they they would prefer one in preference to the other, using whichever unaccepted differentiation they have individually or (minority) collectively adopted.
My understanding is that while the Scottish Parliament is prepared to consider different criteria this is an 'early stage initiative' rather than a firm political stance, despite our like for sticking one finger up to the rest of the UK and wider world.But if using accepted and agreed terms within Scotland or the UK you can differentiate ME and ME/CFS indicating the methods used by existing NHS staff to effectively demonstrate accuracy across diagnosis, and in so doing indicate the objective tests used to thus evidence that difference, then I will concede the point.

But I'm open to being proved wrong.[/quote]

My bolding

We can't, and when we can, we must be absolutely sure we can.

When XMRV came out we had people referring to themselves as having ''Real M.E.''
Even those who hadn't been tested, like myself, were, or at least felt, marginalised; that in some way I was less deserving.

I saw a group of poorly people fighting amongst each other in a way that was difficult to watch.

As an aside I read this thread in the uncomfortable position of knowing that many G.P's can't even diagnose M.E./CFS/PVFS from depression. Perhaps that is one depressing fact we can all agree on.

The terms 'ME' and 'CFS' are not just a matter of nomenclature.
They apply to different diagnostic criteria.
The term 'CFS' is used by the less selective criteria, including the Oxford Criteria, for which post-exertional malaise is not a requirement. The Oxford CFS Criteria selects patients with 'fatigue' only, which could include psychiatric patients.
The term 'ME' is used by the more selective criteria, including the ICC, which is one of the most selective criteria. The term 'ME' is also used by Byron Hyde, and more historic criteria, such as Ramsay.
So the names mean something, and refer to specific descriptions of disease.

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Having semantic meaning is not the same thing as having scientific meaning (see here for ironic twist: Psychiatric Peregrinations ) . No current diagnostic criteria can distinguish between any hypothesised, assumed or implied aetiological process that might be present in any part of, or individual within, the global patient population captured by all the criteria sets that have ever been applied to M.E or associated conditions. It doesn’t matter how much more ‘selective’ one criteria set is than another, without a defined aetiology, there is no way to probabilistically group one set of patients who are suffering from illness of undefined aetiology ‘A’, from those suffering from illness of undefined aetiology ‘B’; at least not without the presence of some differential gross symptom which in other health impairments is demonstrably particular to a distinctive aetiology. Neither PEM nor any other symptom, level of disability or duration of illness recorded in M.E or CFS (or any other associated condition) amounts to such a differential gross symptom.

The use of the terms helps to define the illness, and how research funding is directed. The way the illness is defined is a very important issue.
Actually, it couldn't be a more important issue, in terms of research, treatment, and the qualify of life for patients.

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And what relevance does that have to do with the current thread ? This is where arrogance and ignorance appear to overwhelm effective advocacy, leading to the greatest systemic failure – that of not grasping who the audience is. The capacity for the Scottish Parliament to influence basic health research direction is very, very limited ( MRC Scotland ) with funding of care delivery research being the primary aspect of MSP influence. The health demands of the Scottish population are substantial, that there are MSPs willing to give time to consider the needs of the approximately just 20,000 Scots who might currently be diagnosed under the NICE guidelines is significant, but the Health priorities of the Parliament are going to be dominated by appalling levels of cancer, heart disease, COPD and the consequences of high endemic levels of social deprivation. The idea that M.E/CFS, let alone some fractured part of that population, is in position to demand consideration on its, rather than the MSP’s terms, is fanciful.

You mention a lack of resources.
This is all the more reason why those meagre resources are put to best use, on well focused research, with well defined cohorts.
I've always been very clear that my personal preference is that all CFS and ME patients should be looked after well, and included.
But the illness, or syndrome, which includes post-exertional malaise and other symptoms described in the CCC and ICC, needs to be researched and treated as a well-defined biomedical cohort.
That doesn't exclude other subsets from being investigated, but researchers need to look at well defined populations, and not a broad selection of unknown pathologies.
I think the more that 'ME' is separated from 'Chronic Fatigue', the quicker we will make progress in research and treatment for that group of patients.
The way that pathologies are defined is crucial in understanding disease.

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But research isn’t what is at stake in the Scottish context. These arcane arguments about pathologies are simply not relevant to the MSP’s core brief, which ultimately comes down to health and social care delivery. The M.E versus CFS argument undermines a key advocacy position – that is there are a lot of affected people, perhaps 20,000 in Scotland. But 20k is small fry, distributed across the Parliament, it amounts to no more than around 150 affected households per constituency, not enough to engage an MSP on electoral grounds alone. To argue that 20,000 is actually not the number who are the source of concern – but that it is some far smaller number (just how many exactly ?) is in the Scottish context, advocacy suicide.
IVI

No current diagnostic criteria can distinguish between any hypothesised, assumed or implied aetiological process that might be present in any part of, or individual within, the global patient population captured by all the criteria sets that have ever been applied to M.E or associated conditions. It doesn’t matter how much more ‘selective’ one criteria set is than another, without a defined aetiology, there is no way to probabilistically group one set of patients who are suffering from illness of undefined aetiology ‘A’, from those suffering from illness of undefined aetiology ‘B’; at least not without the presence of some differential gross symptom which in other health impairments is demonstrably particular to a distinctive aetiology.

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You seem to be contradicting yourself.

You seem to be saying that the different diagnostic criteria have no scientific relevance, and are unable to differentiate between patients with different aetiologies, and that 'ME' diagnostic criteria are no more selective than 'CFS'.

In which case, if they are both meaningless terms, why do you prefer the term 'CFS' over 'ME'?

You say there is no evidence for either CFS or ME, so then why are you arguing for one over the other?

If neither 'CFS' or 'ME' exist, as distinct aetiologies, in your opinion, then why are you even arguing over which is the better term to use?

If it doesn't make any difference to you, then why do you insult those who have strong opinions about it?

Neither PEM nor any other symptom, level of disability or duration of illness recorded in M.E or CFS (or any other associated condition) amounts to such a differential gross symptom.

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I disagree. Although somewhat subjectively assessed, prolonged-delayed-post-exertional-malaise seems like a clear biomarker to me, at least for a syndrome of illnesses. There has been research which indicates some biological differences between ME patients and normal controls, post-exertion. If nothing else, PEM can help to select a slightly more narrowly defined cohort for research.

The use of the terms helps to define the illness, and how research funding is directed. The way the illness is defined is a very important issue.
Actually, it couldn't be a more important issue, in terms of research, treatment, and the qualify of life for patients.

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And what relevance does that have to do with the current thread ? This is where arrogance and ignorance appear to overwhelm effective advocacy, leading to the greatest systemic failure – that of not grasping who the audience is. The capacity for the Scottish Parliament to influence basic health research direction is very, very limited ( MRC Scotland ) with funding of care delivery research being the primary aspect of MSP influence. The health demands of the Scottish population are substantial, that there are MSPs willing to give time to consider the needs of the approximately just 20,000 Scots who might currently be diagnosed under the NICE guidelines is significant, but the Health priorities of the Parliament are going to be dominated by appalling levels of cancer, heart disease, COPD and the consequences of high endemic levels of social deprivation. The idea that M.E/CFS, let alone some fractured part of that population, is in position to demand consideration on its, rather than the MSP’s terms, is fanciful.

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Well, earlier you said that ME and CFS are indistinguishable, so you aren't being very consistent.

What I said is very relevant to this thread, as I've explained clearly in other posts.

But research isn’t what is at stake in the Scottish context. These arcane arguments about pathologies are simply not relevant to the MSP’s core brief, which ultimately comes down to health and social care delivery. The M.E versus CFS argument undermines a key advocacy position – that is there are a lot of affected people, perhaps 20,000 in Scotland. But 20k is small fry, distributed across the Parliament, it amounts to no more than around 150 affected households per constituency, not enough to engage an MSP on electoral grounds alone. To argue that 20,000 is actually not the number who are the source of concern – but that it is some far smaller number (just how many exactly ?) is in the Scottish context, advocacy suicide.

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Research, treatment and patient well-being are inextricably intertwined.
If you had read my posts, then you wouldn't be asking me these questions.

Just to clarify: The purpose of me posting in this thread, and attempting to challenge certain opinions, is two-fold.

Firstly it seemed to me that what happened at the 'CPG on ME' was being misrepresented in this thread, or at least some of the commentary was not based on the available evidence. Accusations were flying around, without knowing what actually happened.

And secondly, I have found the repeated insults, on this thread (many of which have now been removed), offensive. Such offensiveness divides us, and does not pull us together.

I think we should all try to understand each other's opinions, and try to understand what motivates people with different opinions, rather than attacking honest and compassionate people just for having different opinions.

I don't mind if people have different opinions to myself, but I do mind if people use offensive language about people who I have sympathy with.

And secondly, I have found the repeated insults, on this thread (many of which have now been removed), offensive. Such offensiveness divides us, and does not pull us together.

I think we should all try to understand each other's opinions, and try to understand what motivates people with different opinions, rather than attacking honest and compassionate people just for having different opinions.

I don't mind if people have different opinions to myself, but I do mind if people use offensive language about people who I have sympathy with.

Ironically, the people on this thread who have been complaining about people who want to 'divide' our community, have been doing exactly that, by insulting those people.

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Ok well I've been through the thread and I can't see any insults or moderation, but I'll take your word for it, Bob.

Taking a vote on exclusion is a divisive measure (should the vote have succeeded) far more so than any reaction I might have had or anyone else's to which you have objected.

No group should be able to dictate a vote that will affect significant (relative) numbers of patients that they do not represent especially on matters that boil down to OPINION.

The trouble with our condition and what some term the 'politics' surrounding it - is that there are too many OPINIONS from so-called experts.

Indeed, I can honestly say that one of the largest psychological pressures I have personally had to deal with over these years have been triggered by enduring the latest EXPERT opinion.

We wouldn't be where we are if there had been a sufficient argument that maintained Myalgic Encephalomyelitis as the name of most relevance. It would then have satisfied many patients I am sure as it would have been in-line with the WHO.

I think when it comes down to it this is the big issue for many. Why can't our condition be called what the WHO once apparently said it should be called?

But you know as well as I do that - apart from the issues about psychology etc. - no aetiology has ever been forthcoming that firmly endorses that link.

NICE acknowledge we have a neurological condition. Historically, because CFS was the preferred term by doctors who objected to ME based on lack of proof (quite rightly so if you think of it from their point of view) we now have a merger viz. CFS/ME.

It is the best that can be hoped for in the circumstances and any attempt to (again) separate the two will take a significant scientific discovery that firmly endorses the nomenclature as well as providing the aetiology.

Chances are and in my opinion this will never include all those who now meet the criteria established by NICE. Chances are and in my opinion Encephalomyelitis is probably not the correct term for most people in the 'pot'.

However, without evidence, the recommended treatments (if you are able to work with your GP and obtain more personalised e.g. drug interventions etc.) appear suitable for all largely as management strategies should you need them or benefit from them.

One has to ask, if 'ME' were to become a separate 'pot' NOW what people who fit whatever the criteria (of the many out there) was determined to be the ONE - expect in terms of improved treatment?

There is much that NICE do not say, much that could be improved, but splitting the 'community' - which would entail everyone be re-diagnosed based on SUBJECTIVE assessments - is wrong.

Now, previously on this thread, 'we' might have been rather abridged in our responses. But IMO that is ONLY because we have had this conversation about a gazillion times before - and the publication of the ICC Criteria has not changed it one iota.

I don't know even if in Scottishland they take the lead from NICE or have their own Guideline? Holmsey - can you tell me? But here in Englishland and even in Dragonland across the mountains - we do.

What would actually change if that vote had gone through? Do patients expect that suddently everyone would get to see a neurologist? Have a scan? What treatment would they be hoping for? Whatever changes they hope for will not be achieved by voting to exclude a population - many of whom probably don't even know about the issues anyway.

It would be extremely helpful if someone could post some evidence of the point of view from either 25% Group and TYMES trust. There must have been something said, that can be reposted. I shall take a looky-loo at their Facebook if I must.

Nobody who is aware of the issues likes the name CFS. 'We' all HATE it. But 'we' cannot change history can we? It is unfortunate but there we go. And btw I was diagnosed with ME way back in the iron ages, so I've been through this mill myself.

Not that that means anyone need agree with me of course

Anyway, if you did vote for 'ME' then who's criteria and opinion would you adopt? What would happen if specific evidence was later found that blew the theory out of the water? And why do you think that 'ME' has not been evidenced with an aetiology, or with proof of 'inflammation of the brain and/or spinal cord' in the last c. 50 years?

Of course I suppose we could adopt a name that has little relevance - like CFS - but you are right. The above vote did have far more to do with it than simple nomenclature and we all recognise that.

Ok. Not even sure if any of that made any sense whatsoever. Shove some links to those other groups that were involved or to a transcript of the meeting - if anyone is able and I'll take a butcher's.

Over the summer recess, a dispute had grown within one of the subgroups, which was escalated into a demand being placed before the MSPs that the full CPG vote on whether it restrict its remit to ME or expand it to ME/CFS.The CPG on ME was set up recognising the benefit of emphasising ME over CFS or any hybrid terms of ME+CFS, while also recognising the need to include individual patients with a range of diagnostic labels between ME and CFS when developing service provision, and recognising the danger in sharing terms such as CFS/ME used by those opposed to proper recognition of ME.The MSPs made it clear that they would not countenance exclusion of patients with a CFS diagnosis from the group’s remit, but acceded to the demand for the vote being placed to the CPG attendees without amendment. The faction who demanded the vote insisted that any inclusion of CFS would hand the remit of the group over to those opposed to proper recognition of ME.At the CPG meeting on 19 September, it became clear that the basis for the vote was being misunderstood by some people who were not fully aware of the original reasoning in the group’ remit, and who believed in the danger claimed by those who authored the vote. But the MSPs also made clear their position regarding the options in the vote.At the meeting, and by postal vote, a majority voted for the ‘ME only’ option while a smaller number (including Ewan Dale) abstained (on the basis that the existing remit better represented patients’ interest than either option), and a few voted for ‘ME/CFS’. So the group effectively voted to abandon its activities in the Scottish Parliament – in doing so leaving it open for those it is opposed to having unchallenged influence over development of health policy nominally covering ME.CGP convenor, Mary Fee MSP, recognised that the vote was not necessarily properly explained or fully understood, and undertook to try to get that vote set aside and a second, properly-stated vote put to the membership, but she will need to persuade her fellow MSPs to accept that, and any future for the group is now hanging on this last decision.

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Well. Now the summary has gone bye-bye's from the MEA site. Perhaps it is being corrected? If so then I don't know what to make of this thread.

I personally think that adopting the term 'ME' (as a direct and equal replacement for CFS & CFS/ME & PVFS) would just be part of a wider process of getting the illness taken more seriously. I'm not under any illusion that it would solve anything over night. But I do think it would be part of a process that moved us in the right direction towards more focused research on, and treatment for, a biomedical illness.

I don't generally advocate for the use of the term 'ME' because many people are adamantly opposed to using the name, for various reasons. Which is fine by me.

But in this thread, I didn't like reading the insulting remarks (now deleted), and I just wanted to point out that many good people have valid reasons for wanting the adoption of the term 'ME'.

The pros and cons of using whatever terminology could be debated for evermore, but I think the Scotland vote was about a more fundamental issue than just terminology. I think it was just about getting a disease taken seriously.

I acknowledge that it is considered divisive by many people, but I'm pretty certain that the motivation for the vote in Scotland was not about excluding people. Not for the vast majority of people anyway.

Using the term 'ME' wouldn't necessarily bring with it any other immediate changes. But it might help focus minds on the biomedical nature of the illness. And it could open up a debate about appropriate diagnostic criteria to be used in research.

I agree that there is a serious issue to be discussed regarding patients who fit an 'ME' diagnosis, but not a 'CFS' diagnosis. I wouldn't want them excluded or to thrown on an even worse diagnostic scrapheap than the CFS/ME scrapheap. That's why my preference is for the 'ME' diagnostic criteria to be used in research, and I don't advocate for this in terms of the clinical side of things.

But researching well defined cohorts is not about excluding anyone. It's about giving everyone a fair chance for medical breakthroughs.

My preference would be for research to be based on very focused cohorts, using whatever methodology the researcher sees fit. This would hopefully bring about improved treatments for all cohorts, whatever their definition. It's just good science to try to define a cohort in the most selective way possible.

Based on my interactions with ME patients about these issues, I think that the Scottish vote probably had that sort of thing in mind.

Like I said before, I think that communication is the key.
Those who want the focus to be on 'ME' need to explain their reasoning carefully and compassionately, and those who want the focus to be on 'CFS' need to do the same, if we are to support and care for each other.

But for me, the nomenclature is a distraction. It's all the other stuff, related to the names, which is important.